Every day at least one person asks me “How are you feeling?” I try to be honest but eventually it’s tiring. It sucks a piece of my soul to not be able to give the generic answer of “I’m fine.” I don’t even remember what “fine” feels like anymore. I assume it’s keeping a daily routine and as long as the routine isn’t interrupted, then the day itself is fine. Right?
Even though I lost my job, I try to keep a daily routine. I wake up around the same time every morning, shower, get my equipment and formula together so I can feed and figure out what my task of the day will be, and then go to bed around the same time every night.
I have a great family and amazing wife. Good friends that check in on me and tell me positive things. I’m very honest and I talk to people that ask me questions. But something happens at some point during the conversation. I get “the look”. Anyone with a chronic illness understands what I mean. For those of you reading and want to try to understand, I’ll explain.
“The Look” is that sudden glaze in one’s eyes where they drift into their thoughts of unintentional pity. The I’m sorry you’re in this situation. The I wish things were different. The you’re strong and can do this. The god doesn’t give you more than you can handle. The I remember how you were before you were sick. *Queue the flashback memory reel*
I try not to call people out when I notice this happening and try to continue our conversation but sometimes, it actually bothers me. Having a chronic illness weighs on me and I try to explain some of my fears, concerns, and irritations to my support system at home. But I feel like it weighs on them even more because then the motivational talks happen. Sometimes I feel like it’s them trying to convince themselves everything is going to be ok more than it’s helping me.
While I appreciate everyone and their efforts, I feel like I would benefit from an actual support group. I have the online ones that I’ve posted about previously, but it’s not the same. I’m talking about the groups you get a glimpse of in movies/tv shows. You know, the groups that sit in a circle or facing a stage; the group of people that state their name and their story then the group engages in a beneficial discussion. I don’t know if this actually exists for my scenario of Gastroparesis, but I would settle for for something close like chronic illness.
When I search for support groups in my area, I can find a lot of cancer groups, depression/anxiety, addictions, bereavement, anger management, LGBT, relationships, behavioral issues, different cancer groups and single parents groups. All of those groups are great to help those individuals that need it, however they don’t help me.
I almost feel lost. No, scratch that… I do feel lost. No matter how much research I do and how many blogs I read/ comment on, I’m missing the human interaction. I’m missing the raw emotions of someone going through similar scenarios. I’m missing the thoughts that aren’t perfectly calculated before posting them online. I need to talk to someone that doesn’t give “the look” and can understand that no matter how much I think I’ve prepared for something—I am never going to be “ready” to have my life altered in a way that mentally drains me and plays with my emotions. I need to be able to talk to a group of people face to face that just simply understands without pity– That can figure out what “I’m fine” truly means. I need a different ray of sunshine.